Tag Archives: full life

Who could have imagined?

Yesterday a woman who works at Barnes & Noble walked right up to Lucia and greeted her–she knew her but she didn’t know me.  One of Lucia’s favorite nurses, determined that she wouldn’t become isolated with our recent move to the country, regularly takes her on outings to book stores, walking trails, parks, and libraries, and this woman had read books with my child many times!

One day when I was working from home and a friend stopped by the house, Lucia was out on one of these excursions unbeknownst to me.  The friend was a little disappointed.

Lucia has her own social life, I chuckled.  Who would have imagined?  I thought.

Indeed, I think it’s easy given Lucia’s diagnosis, physical, and cognitive challenges to presume that she lives a limited life, but this is so far from the truth.  Precisely because we’ve been forced to rely on nurses, doctors, and therapists to help us care for our medically complicated child, Lucia’s social network has certainly widened beyond the typical two and a half year old.

At the outpatient facility where Lucia does her therapy she’s not usually interested in toys, but she always cranes her neck to see the other children running and jumping and shouting.  This morning Lucia’s nurse, having just returned from China, brought her a Chinese children’s book and Lucia cocked her head to listen as the two of us yammered on in Mandarin about her trip.  Several months ago, one of her nurses put her hair in Jamaican braids!

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Lucia taking a nap on the D& R Canal in NJ.  My photo.

I think about the incredible richness of the life Lucia leads and I am in awe.  Our minds, our predictions, our perceptions of life with disability often fail to see beyond the presumed downside of dependence, medical necessity, and constant care.  But Lucia’s needs have, in such a good way, forced us all to expand our very limited social circles and our very limited notions of what life with disabilities entails.

A month or so ago when I spoke on the phone with a parent advocate about Lucia’s impending transition out of the state’s early intervention program and into school, she compassionately yet inaccurately projected another presumption onto me:  “Oh I’m sure your heart is just breaking at the thought of her going to school all day, on that big bus.  I’m sure it is so hard to see her go.”

Perhaps it would be hard to see Lucia get on that bus if she hadn’t already been living her life so fully.  But knowing how much Lucia enjoys all of these people, adventures, and diversity in her life, my husband and I are decidedly eager and excited for her to start school.  Perhaps another thing all these doctors visits, nurses, and therapists have prepared us for is trusting others with our kid, knowing it’s so important to share her rather than shelter her from the world.

When I look in awe upon Lucia’s full life, I cannot fathom the wisdom of God.  This is precisely the life I would want for my child, and yet, who could have imagined this life in particular?  Who could have imagined this village that God has provided, this little social butterfly despite her lack of words and gestures?  Who could have imagined that it would take the world and its limitless possibilities to help us see how Lucia has expanded all of our lives?  Who could imagine that a life with disabilities could be so rich and nuanced and bold and grand?

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Every time I look at this photo of Lucia I can’t help but smile. (My photo.)

Well, God, of course.  

And thank God for that!

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A Lament of Modern Medicine

A week ago today, my husband, our daughter, and I spent the morning at a clinic appointment at the hospital.  This was a good hospital visit–the kind where it seemed like every doctor who came in the room wasn’t complimenting Lucia’s abilities or bemoaning her lack thereof but seeing how happy and comfortable the three of us were.  It felt like we and the doctors, we finally got each other, like so many of them were really seeing Lucia as more than X-rays and EEGs and milk scans and surgeries.

And then bam.  

The very next day we got a phone call that something was wrong on the X-ray and it all seemed to fall apart.  I began to scrutinize what more I could have done for Lucia along the way as a parent, I began to feel the weight of failure, the pain, cruelty, and fatigue of hearing so very, very often that there’s something “wrong” with your child.

In my classes, as an anthropologist, I often seek to make students aware of what I call the “cult of medicine,” the fact that too many of us actually seem to worship and adhere to medical wisdom above all else, and if we let it, it and its seemingly endless cures and technologies and surgeries, will certainly rule our lives but it may not satisfy us.

Don’t get me wrong, I’m not against science or medicine.  I love me some doctors, especially those who have helped us make sense of which interventions are necessary and when we can just let Lucia be.  In fact, on Thursday we’d just said goodbye to a doctor who looked me in the eye the first day Lucia received an abnormal EEG and told me, “No matter what happens today, you’re still taking home the same baby you came with.  Nothing changes today.”  I instantly sigh and choke up every time I repeat that phrase to myself.

Yes, we said goodbye to a good one on Thursday, and I know all these things about medicine and Lucia, which is why I was so beat down, so frustrated that I let myself doubt it all.  In the face of yet another diagnosis, another medical power play, another anonymous phone call about something that was wrong with Lucia, I let myself imagine that things had actually changed.

But they hadn’t really.

Back home and even in the doctors office, it seemed the subject at hand was blissfully unaware that her future was being talked about in X-rays and injections and surgeries.  In fact, she even flashed a few smiles, last night she giggled without descending into crying (a new feat!).  In the midst of the medical mire, these things heal me–to know that my baby is still the same baby I birthed, I’ve known, I will know.  Nothing can change that.

But this life we live is a balancing act that often feels lonely and challenging and impossible and weary.  Every decision we make forecloses or necessitates another; we fumble, we flail, we debate, we fear, and above all, we love our daughter so fiercely that it all really hurts.

My husband and I have been speaking in metaphors lately because prose just doesn’t seem to do it.  So perhaps one more if you will: it’s like our family is on a little boat wading through the great expanse of medicine, and for a moment, we were a bit off course.  But medicine can be really great and grand if you keep your little rudder about you, which keeps your ship balanced and unchanged.

And so we will go on.  I will go on.  In fact, I will drive down to the hospital again this morning, but hopefully bolstered by my rudder, my faith, and that little posse of people that get me and my family who are adrift in this medical world.

I will go on picking up the pieces…but it is not easy living in a world that parses and prods and makes knowledge in bits and parts of your kid.  It’s not easy pushing against the endless barrage of rejection and criticism and diagnosis that medicine provides when you’re in search of genuine connection, communication, and life well lived.  It’s not easy to keep my wits about me in this world that can only seem to find faults with this beautiful little girl I was so blessed to help create.

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Our little tribe.  My photo.